Paul K. Longmore Institute on Disability - activism

A Telethon Revival in 2020, Seriously?

Nathan Burns — Wed, 21 Oct 2020 20:42:32 +0000

By: Cathy Kudlick

The Muscular Dystrophy Association (MDA) will proudly revive its iconic Jerry Lewis Telethon on October 24. Coming in the midst of a pandemic and polarized political climate, the decision is both a brilliant move and a blow to the disabled people who make up 1 in 4 Americans.

Everyone knew of the extravaganzas that dominated American television each Labor Day weekend in the 1960s through early 2000s. A blend of “television” and “marathon,” the variety shows featured cheesy comedy, magic acts, gospel choirs, big name entertainers, and CEOs with household names who joshed with emcees like comedian Jerry Lewis as they celebrated rising donation numbers on giant glistening tote boards.

By many measures, this is a perfect time for a revival. People across America are anxious, depressed, and bored. An opportunity to support scientific work that leads to understanding disease while improving someone’s quality of life seems refreshingly non-partisan and humane. Not only that, but according to MDA, over a half century Jerry Lewis raised over $2 billion for research, equipment like wheelchairs, and life-changing summer camps for kids with disabilities.

So why are many disabled people and our allies worry that the telethon’s revival could do more harm than good?

The simple answer: despite significant gains symbolized by the 1990 Americans with Disabilities Act (ADA), these fundraising efforts draw on outdated stereotypes that rob us of dignity, and ultimately of options. The program’s return threatens precarious gains on mainstream TV with shows like “Speechless” and “Glee” starting to chip away at telethon-inspired ideas directly descended from pitiful Tiny Tim and freak shows that displayed human oddities for profit. Because telethons set a stage with stories scripted by the nondisabled, we rarely get to be heroes in stories of our own telling, which leaves us one-dimensional, damaged strangers.

While on the surface the October 24 event may look updated with today’s latest tech, keeping the name and favorably mentioning Lewis (abruptly fired from MDA in 2012) suggests little has changed. We’ll be pleasantly surprised to find evidence of boldly-expressed lessons learned from the disabled people who protested against being used on the shows to inspire pity and who condemned Lewis for his contempt for disability rights; a-political framings of hopelessness and tragedy are hard to shake when it comes to disabled people, especially after decades of repetition in successful fundraising.

Here’s the thing: attitudes like these sneak in unawares, for people with and without disabilities. They’re passed down through generations to media influencers, to presidents and policy makers, to teachers, to doctors, and to potential dates. They surface in too many Hollywood hits where people with disabilities (played by non-disabled actors who unnervingly often win Oscars) are angry, sad, bitter, but “fortunately” choose suicide. They arm the playground bullies and fuel the giddy horror of TikTok’s recent “New Teacher Challenge” where parents shared images of their own children reacting in horror after seeing a photo of someone’s facial disfigurement and told this would be their teacher.

Let’s face it: stories that inspire donors to give money to seek a cure for childhood diseases aren’t the ones that convince those same donors to hire, include, date, or learn more about the person with a disability they’ve just met. Telethons have no incentive to show the resourcefulness people with different disabilities bring to crossing a street, communicating, figuring out a bureaucracy, using technology, cooking a meal, or framing ourselves as competent to someone unaware that they’ve been brainwashed by telethons.

In the spirit of a truly forward-looking telethon that would improve more than a handful of disabled lives, here’s my dream for the October 24 event. It would raise money to undo the afflictions visited upon millions of people with disabilities and our families by fifty years of propaganda. To test my theory that telethons need disabled people more than disabled people need telethons, it would be run by and for people with disabilities — nothing about us without us! It would seek a cure for bullies and shame and prejudice. It would foreground our unique expertise on the fragile points in the healthcare system and government assistance programs. It would educate viewers about how much more rewarding it is to live in solidarity and interdependence than clinging to false dreams of independence. Alongside pain and frustration, it would share the exuberance and joy of the disability community.

If so moved, give to the MDA Telethon on October 24. But don’t be lulled into thinking “mission accomplished.” Pair this with learning more about what disabled people are doing in the arts, politics, and education to make society better, then donate to them too. Fighting for a medical cure is an especially worthy cause in a pandemic. But until that cure arrives, so is supporting dignity, opportunity, and a decent quality of life for every human being.

Tags:

Telethons

disability history

activism

ADA

“Save Changes”: Telling Stories of Disability Protest (via Nursing Clio blog)

Visitor — Wed, 05 Apr 2017 18:06:21 +0000

This is a cross-post from the Nursing Clio blog originally posted here.

By: Catherine Kudlick

At first, it was a simple case of “if you can’t beat ‘em, join ‘em,” as I worked with WikiEducation Foundation to teach a methods course in which students created disability history content. But the more I learned, the more it became clear that we were engaging in multiple forms of protest, especially once I began working on my own contribution.

My past warnings to students not to rely on content created by the crowd were perhaps a vestige of anxieties that had led authorities to suppress Wikipedia’s precursor, L’Encyclopédie in the decades leading up to the French Revolution. Its impresario, the Enlightenment thinker Denis Diderot, had already been imprisoned for challenging established knowledge.

Diderot would have been pleased by Wikipedia’s mission, “to bring about a world in which every single human being can freely share in the sum of all knowledge,” at the same time that he would recognize its flaws. Most editors are young white men who, consciously or unconsciously, ignore those on the margins. And Wikipedia’s “notability” requirement (“significant coverage in reliable sources that are independent of the subject”) inherently favors information from establishment sources. Such rules reinforce existing ideas about which topics merit coverage.

My class faced real challenges. First there’s a daunting set of Wikipedia codes and hierarchies. And I was surprised to discover that even a generation weaned on social media fretted about public feedback from strangers.

Then there was the focus on disability history. A field that began to coalesce around 2000, it seeks to expand thinking about a group that makes up nearly one fifth of the US population today. Unfortunately, a prevailing belief that disability is a static biological condition prevents most from understanding it as something shaped by society and culture much like race, gender, class, and sexual identity. At the beginning of my disability history courses, I tell students that they’re on the cutting edge of history, much like those a generation ago who learned about women’s history and the history of African Americans.

I told this class that they were making history by writing it.

Pointing out that history has a history, I invited them to consider how putting a group in context can combat prejudice and stigma. An entry that tells the story of your people on the world’s seventh most visited website can’t help but catapult you from being an individual struggling alone to being part of something far bigger. With belonging comes a sense of pride, a sense of having something to contribute.

Learning along with my class, I wrote an article on the longest nonviolent occupation of a federal building in US history, the “Section 504 protest” in April 1977. Through an exhibit called “Patient No More: People with Disabilities Securing Civil Rights,” I’d helped bring this little-known disability Stonewall to life. The successful month-long occupation by over one hundred disabled people and their allies would pave the way for the Americans with Disabilities Act (ADA).

HEW employee Bruce Lee posted a sign, reading “504 is law now make it reality,” in his office supporting Section 504 during the protest. (Photograph by HolLynn D’Lil)

Four years before the protests, congressional staffers had slipped anti-discrimination language from the Civil Rights Act of 1964 into a vocational rehabilitation bill that was up for reauthorization. This countered views of “the disabled” as pitiful wards of charity. Rights included making public spaces accessible to people in wheelchairs and mainstream education open to qualified students with disabilities. This “Section 504” applied to nearly all public spaces, including government offices, universities, schools, hospitals, and transportation systems.

Disability activists understood 504 as their bill of rights that still needed one signature from the Secretary of the Department of Health, Education, and Welfare (HEW) in order to be put into effect. Worried about costs, officials from the Nixon, Ford, and the newly-elected Carter administrations had stalled. After four years of trying every legal channel, activists snapped. On April 5, 1977 people with disabilities took to the streets in cities with regional HEW offices. Almost everywhere protests were either cut off or fizzled.

In San Francisco things were different. With little warning, over 100 people streamed into the Federal Building and refused to leave for nearly a month.

504 protesters occupied the HEW offices at 50 United Nations Plaza, making them the headquarters of the “Section 504 Emergency Coalition.” (Photograph by HolLynn D’Lil)

The protests succeeded in part because of the Bay Area’s unique climate. Since the 1960s disabled people had been drawn to the rich mosaic of minorities who challenged the status quo: gay men and lesbians, students, artists, and practitioners of new religions, all that included people with disabilities. Decent weather made it easier to participate in antiwar protests, civil rights demonstrations, and the Free Speech Movement gathering momentum at UC Berkeley. In this electrifying environment disabled individuals came to think of themselves as people with rights, while putting them in touch with potential supporters.

The 504 occupation also succeeded because savvy organizers, including Kitty Cone, Judy Heumann, and others, had spent years cultivating relationships and building coalitions. In addition to galvanizing disabled people themselves, they had educated politicians. Mayor George Moscone helped with portable showers while Congressmen Phil Burton and George Miller had the 4th floor of the federal building declared a temporary “satellite office of congress,” a theatrical stunt that allowed them to hold a public hearing about the protesters’ concerns to garner media attention. City officials allowed hundreds of people to gather each day on Civic Center Plaza below to cheer on the occupiers.

The protest also enjoyed wide support from local community groups. In line with its popular food programs, the Black Panther Party brought in hot meals for all 100+ occupiers, including BPP members Brad Lomax and his attendant Chuck Jackson.

Protesters gathered in front of City Hall in support of the 504 occupiers. (Photograph by HolLynn D’Lil)

And the disabled people inside risked their jobs and even their lives to be there. Amidst office furniture, people from different races, social classes, and with a variety of disabilities and their allies created a makeshift society. Some were seasoned protesters while others had never slept away from home before. Spending so many hours together forged cross-disability coalitions rooted in true interdependence — such as when someone who couldn’t speak could dial a phone so that someone without use of her hands could make a call. Just like in any community, there was bickering and intrigue and romance, but here there was also a sense of purpose and a political awakening.

I teared up as I hit the “save changes” that would make this story public on Wikipedia for the first time, knowing a hard-fought victory was now part of electronic history and of course up for grabs.

But how permanent is it? Even before the November 8 election ushered in an era ever more hostile to minority rights, I sensed something like 504 would now be hard to pull off. Everyone is on guard, literally and figuratively, in a national climate of building walls rather than alliances.

I imagined my students hitting “save changes” buttons of their own. Future activism will likely be about occupying virtual spaces and other tactics we can’t yet imagine. History inspires us and the next generations to take heart that the seemingly most disenfranchised can — in the words of 504’s Kitty Cone — “wage a struggle at the highest levels of power and win.”

Tags:

Subversive Access: Disability History Goes Public in the United States

Visitor — Tue, 24 May 2016 18:28:11 +0000

Disability History is taking off in Western Europe, as evidenced by the Public Disability History Blog started in January 2016 that has already surpassed 10,000 visitors. In the guest blog shared below, Catherine Kudlick joins the conversation by introducing the “Patient No More” exhibit.

In summer 2015, the Paul K. Longmore Institute on Disability at San Francisco State University mounted an interactive, multi-media exhibit “Patient No More: People with Disabilities Securing Civil Rights". We faced several daunting challenges that ultimately made our installation like no other. In fact, we have been sharing our process with museum professionals and continue to learn as we go. 1977 disability protests in San Francisco. Photographed by Anthony Tusler

First, the story itself: on April 5, 1977, more than 100 Americans with and without disabilities began a twenty-six day occupation of San Francisco’s Federal Building to insist on getting civil rights. Four years earlier, Section 504 of the Rehabilitation Act of 1973 made it illegal for any facilities or programs funded by the national government to discriminate against disabled people. One official’s signature stood in the way of the law taking effect. After four years of waiting, a coalition made up people with different disabilities launched protests across the country. San Francisco’s occupation proved the most involved and successful. In fact, thanks to support from local community groups like the Black Panther Party, Glide Memorial Church, the Gay Men’s Butterfly Brigade, as well as local and national politicians, it remains the longest unarmed take-over of a federal building in US history. The occupation itself and subsequent victory gave birth to a national disability rights movement and helped pave the way for passing Americans with Disabilities Act (ADA) thirteen years later in 1990.

Tags:

What the 504 Protest can Teach about Activism Today

Visitor — Tue, 10 May 2016 21:42:14 +0000

The following letter to the editor appeared in the SF Chronicle in response to this column:

By: Emily Beitiks

Regarding “Inflexible protesters are failing Politics 101” (May 5): C.W. Nevius accuses the Frisco Five of “failing Politics 101.” However, his critique seems oblivious to the truth that when the system has completely failed your group, playing a game of compromises (which leaves the system intact) might not be desirable. To understand this better, we can look back at an all-but-forgotten San Francisco protest from 1977, where 150 disabled people and their allies occupied a federal building to demand the first disability civil rights legislation.

After 25 days, the protesters left victorious. Some of the occupiers also held a hunger strike throughout. My organization recently conducted oral histories with people affiliated with the protest. With each participant, I asked: “What was your plan B? What would you have done if your demands were not met?” and repeatedly, I received the same answer: There was no backup plan. They were going to just stay in there until they got what they were asking for. Period. What Nevius forgets is that when your government makes you feel as though your people are under attack (let alone when you have suffered literal casualties, as the Frisco Five have), buying into that same power structure is not an acceptable option.

(SF Chronicle "Letters to the Editor" post here)

Tags: